Notes by Helen Cave on behalf of the Wellness Hour
Life brings change. Life would be boring if it didn’t encompass change. Yet the changes that FSHD brings to us are more intense than most—-if not all—-of us would voluntarily choose. Adjusting to life with FSHD is an ongoing process. In some ways it helps us better face the eventuality most people experience in their later years: aging. Except the combination of FSHD plus aging presents new and uncertain realities.
As individuals living with the unpredictable progression of a FSHD diagnosis, we learn (sometimes easily and other times not so easily) to embrace adaption and flexibility. While FSHD may not affect a small number of us very much as we grow older, it is more likely that we will become aware of the impact of physical limitations in our day to day life much sooner than other people living without similar health problems.
These days, “aging in place” is being promoted more and more. For those of us with FSHD, is this a realistic choice? If yes, how do we plan ahead and what things can we do now (or fairly soon) to prepare to age well with FSHD? Planning ahead and thinking of our future needs is a good thing to do. However, our future options depend on our individual situations which can vary greatly. We need to remember this and be gentle with ourselves if our personal situation differs from others living with FSHD.
“Aging in Place—Planning & Preparing”
This Wellness Hour, held in July 2024, was an excellent resource to help us face this stage of life with FSHD. [Note: Much of this month’s presentation was applicable to anyone with FSHD who is experiencing significant progression at younger ages.]
Our two guest presenters were Hailey Conway and Sam Koemel, co-owners of the In Home Preferred Company in Indianapolis, Indiana. They met while attending the University of Indianapolis and both women graduated with Master degrees in Gerontology and Doctorate degrees in Occupational Therapy. They then worked as occupational therapists at in-patient rehabilitation settings with adult patients (many were seniors) recovering from significant health conditions, surgeries, and/or injuries. They observed that several of these people were being discharged home to settings that posed serious accessibility challenges.
Hailey and Sam recognized a definite need for services to bridge this gap to enable people to return to safer home environments. They decided to do course work which qualified them to be Certified Aging in Place (CAIP) specialists. Following that, they founded their new business which offers home consultations and assessments; recommendations for modifications/renovations; and can also include overseeing the contractor(s) doing the modification/renovation work.
Hailey and Sam shared their definition of aging in place as “living in one’s home safely, independently, and comfortably regardless of age, income and ability level”. They then described the initial step of a consultation—-taking time to discuss the client’s specific needs and hopes related to aging in place safely and holistically and realistically. They provided many pertinent points related to aging and the future. They encouraged us to each take adequate time to think of our specific circumstances and wishes for our future. Listed below are many points which they include when dialoguing with a client before focusing on and providing actual adaption or renovation suggestions. Each person’s answers (to the queries listed below) will vary as none of us can predict our personal FSHD progression nor other age related changes that may arise. Hailey & Sam emphasized that it is valuable to prepare for our futures by taking stock and looking ahead.
This detailed summary from this session is packed with valuable tips. You can download it here: FSHD Wellness Hour July2 024 AgingInPlace
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